Dementia and Ageing: A Spiritual Perspective

Dementia is a cruel disease, robbing the person who has it of their independence, their memories and their personality. What remains is only a vestige of the person known to family and friends – a sad, rather forlorn shell of what used to be.

How then should we view this process that affects more than 30 million people worldwide and will hit 115 million by 2050?

We often find ourselves mourning the loss of a loved one with dementia even before they physically pass into the next world. Coming to terms with their loss of cognitive, and even physical, abilities, and having to move into the role of caregiver is a difficult adjustment.

In order to make this adjustment in a way that is most helpful to both them and ourselves, we need to look at the whole issue of dementia in a new way.  It is a huge challenge, both emotionally and physically, but it can be helpful to try to understand dementia from a spiritual perspective.

Firstly, we are assured in the Bahá’í Writings that the soul remains intact despite the loss of mental and physical faculties:

Know thou that the soul of man is exalted above, and is independent of all infirmities of body or mind. That a sick person showeth signs of weakness is due to the hindrances that interpose themselves between his soul and his body, for the soul itself remaineth unaffected by any bodily ailments.Gleanings from the Writings of Baha’u’llah

This is obviously also the case for anyone with a mental or physical impairment, and not just relevant to the elderly. But when dementia or sudden illness strikes and robs our loved ones of their faculties, we are in shock and find it hard to accept that they are now changed forever.

Once again, we turn to the Writings and find that the constant and unchanging nature of the soul has been described as being like the sun, and the mental faculties as rays that emanate from the sun. When the rays fail to emanate, it does not mean the sun has ceased to exist, merely that the mirror that is the temple of man has ceased to be able to reflect its glory. In another passage, Bahá’u’lláh has explained it thus:

Consider … the sun when it is completely hidden behind the clouds. Though the earth is still illumined with its light, yet the measure of light which it receiveth is considerably reduced. Not until the clouds have dispersed, can the sun shine again in the plenitude of its glory. Neither the presence of the cloud nor its absence can, in any way, affect the inherent splendour of the sun. The soul of man is the sun by which his body is illumined, and from which it draweth its sustenance, and should be so regarded.Gleanings from the Writings of Baha’u’llah

So our challenge now is this: how do we relate on the level of soul to soul when all our lives we are used to relating to people through our minds and our intellects?

While this seems difficult, it is actually something that we already know how to do. This is something that comes instinctively when we interact with babies – we smile at them, we touch them, we show that we care for them by being physically present. We know it is possible to communicate on a simpler level, without the use of language.

We also do it to a certain extent with people with whom we do not share a common language – through the touch of a hand, a smile, a kind deed. In other words, we take into account the level of interaction that is possible and we make adjustments and allowances. And so it is with patients with dementia.

It is important to relate to the person with dementia with respect and on a level that acknowledges their feelings and not ours. We are not there to assuage our feelings of loss or guilt or anger or pity, but to walk alongside them in their reality. If they are feeling confused, we acknowledge their confusion. If they are angry, we acknowledge their anger. We let them express their feelings by asking them how things are for them today. If things are fine and they want to talk about the weather, or the food, or someone they knew when they were younger, or an event that occurred only in their imagination, then we talk about that.

If conversation is too difficult and all we can do is offer silence and our own presence, this too can be enough. Physical companionship – with the caregiver just being there in the room can be a source of great joy and happiness.
Bahá’u’lláh assures us that service to our parents is one of the greatest paths of service open to us:

Should anyone give you a choice between the opportunity to render a service to Me and a service to them [parents], choose ye to serve them, and let such a service be a path leading you to Me.

This spiritual aspect of the journey we take when we offer companionship to a parent with dementia cannot be over-emphasised. Even when the parent’s ability to recognize or express appreciation for this service is impossible, we need to understand the importance of our actions, as they do have an effect on the soul – both ours and theirs.

When we perform acts of selfless service, we are in effect assisting in the development of our souls – away from self-centredness and closer to reliance on God and His Will. Understanding that the human soul is immutable despite the veils of illness and declining mental competence helps us develop virtues such as detachment, forbearance , patience and compassion.

Seen in this perspective, we understand that the challenge of caring for a parent with dementia can open us up to developing such attributes. In times of crisis and difficulty, we find opportunities for growth and development.

As Bahá’u’lláh has said:

Verily God hath made adversity as a morning dew upon His green pasture, and a wick for His lamp which lighteth earth and heaven.

His many Writings can offer great consolation when we are afflicted by tests and difficulties:

Merge thy will in His pleasure, for We have, at no time, desired anything whatsoever except His Will, and have welcomed each one of His irrevocable decrees. Let thine heart be patient, and be thou not dismayed.

For us and for our loved ones suffering from dementia, the journey of our souls is the true journey through this physical life. Suffering and tests are the catalysts by which we become purified from the dross of materialism, and through which we attain clarity about the true meaning of our purpose on earth and eventually realise the station of divine happiness.

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Discussion 19 Comments

  1. I’ve not commented here before. This post touched me profoundly. I’m a psychotherapist and it is my honor to be with my clients on their spiritual journeys. It makes no matter whether they understand that the pain, fear and suffering they share with me is a spiritual journey, I know.

    I believe what you wrote applies to all “conditions” of human life and how each of us can be present in the best way possible. I will share your wonderful post with others. Thank you.

    1. Thanks for your feedback Judith. I agree we need to be aware how to be lovingly present with people no matter what their outward condition.

      1. I took many copies along to a meeting at the gallery and said I had a wonderful article on dementia and would anyone like a copy, I had to print off more copies as it was very popular and I have circulated it via the Prayer Tree as well.
        Thank you

  2. Although I believe the soul is untouched by dementia I would rather be allowed to die than to be an emotional and financial burden on my family and country. I will make arrangements that I receive no medical treatment that would prolong my life.

  3. I have been in the field of gerontology for over 25 years, and it is so supportive to see that other Baha’is are walking a similar path. As to Avigales comment about it being preferable to die than to be a burden. A vie held by many. However, I always wonder if the Soul is still done yet. All the time the soul is unable to fully express it’s influence is difficult for it …which makes that a “test” and we are encouraged to not avoid tests. ALL this leaves us with a dilemma. I deal with this on nearly a daily basis in my work. This topic leads me to consider contributing as a writer. I am SO happy to see posts address these issues that are always so difficult. He is God!

  4. I believe that the soul is put “on hold” when a person is demented and incapable of making right choice. Experiences we face are not tests if there is no free will to make choice and no “mind” to learn from those choices. The soul continues to learn and spiritually grow after death.
    We should not try to keep people alive but let them die a natural death to release the soul.

  5. First, I want to thank you…I love this blog! I’m not yet officially a Baha’i but I’m learning so much from this blog.
    Second, I want to thank you for this particular article. It was posted just at the time I needed it. My mother has dementia and had to move in with me about 5 weeks before and I’ve been having a hard time coping with the situation and having no clue what to do. This post has given me some hope. I’m saving it so I can read it over and over. Thank you.

  6. Dear Lynette,
    This article was forwarded to me by a Chinese Baha’i friend and it was very good reading. I’ve been in the States this past year helping my dad care for my mom who has advanced Alzheimer’s – she’s 72 now and we noticed the steady decline in memory and speech begin about 5 years ago; the last 2 years physically she lost a lot of weight, strength and ability to walk (due to loss of balance). The disease appears to run in Mom’s family on the women’s side – her mom, grandmother and a couple aunts had it, plus one of her younger sisters is now showing symptoms at age 65.

    Your point about communicating by simply being fully present and aware is very accurate, using body language and facial expressions more and more as the person with the disease speaks less and less – and this communication is amazingly effective for the important topics, really, namely the bits of spiritual themes or words mentioned, and saying prayers together (or at least the care giver is reading them).

    “Even when the parent’s ability to recognize or express appreciation for this service is impossible, we need to understand the importance of our actions, as they do have an effect on the soul – both ours and theirs.” — yes! as the very first quote in the Ruhi study books emphasizes and you reinforce: “The betterment of the world can be accomplished through pure and goodly deeds, through commendable and seemly conduct.” These deeds and this conduct depend solely on us, not other people, and thus as you noted, the Alzheimer’s patient gives those around her a great chance to practice and strengthen those spiritual qualities (virtues) that are the only things to go with us from this world to the next.

    One additional thought I’ve had concerns the knowledge (in ‘Abdu’l-Baha’s Will and Testament) that the worst thing that could happen to a person in Baha’i spiritual terms is becoming a Covenant-breaker……… it’s just my opinion, but perhaps because my mom has developed Alzheimer’s, this worst fate is now impossible for her, and she’s “made it”…… all the trials and tribulations, doubts and difficulties of this life (that most of us must guard our faith against until our last breath) no longer can change her mind, and she’ll assuredly get into Baha’u’llah’s arms for a hug when her spirit is released from this world to His.

    Well, it seems like a good thought to me. Mom was the first Baha’i in the family, so she’ll have a special privilege/service in the Abha Kingdom (according to Corinne True, something ‘Abdu’l-Baha said). We can all get together again up there. Thanks again for the article. 🙂

  7. A very good article but unfortunately dealing exclusively with elderly parents suffering from dementia. I am trying to find something helpful for an elderly man whose wife has been placed in a care home suffering from dementia. His intellect is unimpaired, but he is distraught at the loss of his wife to Alzheimers.

    1. Dear Paul, although I did mention caring for a parent with dementia at a couple of points in the article, much of what was written would be equally applicable to anyone. It would be particularly hard for a spouse and I would imagine there would be A great deal of grief involved. A support group for spouses of those suffering from dementia would offer help and counselling if your friend was able to find one in his area.

  8. Dear Lynette,
    Many thanks for your response. Your article is the most helpful I have read on this subject, and I will draw on it when I write to my friend. It is just that I was looking for something that I might give him to read that would more or less directly relate to his situation, i.e., the great distress and loneliness that he is suffering at the loss of his spouse to the disease. But as you say, much of what you said is applicable. The quotations from the Gleanings, and the practical advice that you give, are very helpful. He wrote (on a Christmas card) to tell me what had happened, and to say that he was planning to move to live nearer to his daughter. I will try to put him in touch with a local support group.

  9. My elderly dad passed away in February having had a form of Dementia that progressed quickly in the last couple of months. I found it hard to watch him in those last few months, but I recognize it was a test for my family and I. I never thought until I read this site that it was a test for him. I hope it helps his soul on it’s journey in the next world.

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