Understanding the Role of a Caregiver in Dementia

Dementia is a progressive disease, all types of dementia are progressive. A person’s ability to remember, communicate, understand, express, problem solve, and reason gradually declines. The role of the caregiver changes as the individual progresses with dementia. This means the caregiver’s understanding of the requirements of the individual has to progress.

From our experience working with individuals with dementia and the caregivers we’ve drawn up a brief guideline

Stage Person with Dementia Caregiver’s Role What Caregivers Can do
Stage 0: No Impairment No significant memory loss. The person is fully oriented, normal judgment, and problem-solving ability and able to carry out their normal daily routine. There is no impairment in their abilities. The person is fully capable of self-care Your role is a friend. Get them involved in activities that require them to use their cognitive skills. Also, encourage them to go out and socialize, volunteer, and find a hobby.
Stage 0.5: Possible Dementia The person is fully oriented but may have minor inconsistencies with their memory. There is slight impairment noted in their social interaction, intellectual interest, interest in hobbies and ability to solve problems and make judgments. The person is fully capable of self-care You act more like a care partner; you provide support, love, and most importantly companionship. You are there to help them with a plan for their future and their daily routine. They may need help with remembering things, words, names, and appointments. Help them stay organized with shared calendars, notes, and medication schedules. Make sure legal and financial decisions are planned for the future. Encourage the person to be involved in activities they enjoy. If they live alone, call or visit them every day.
Stage 1- Mild Dementia: The person has moderate memory loss, experiences moderate difficulty with orientation, handling problems and functioning independently at activities. The person needs prompting with their personal care. Their social judgments are maintained and they are still engaged in some activities. Your role gradually moves towards a caregiver. Apart from the emotional support you provide, you also act as an aid for their daily living. Help them plan their budget and allowances. Plan a daily routine that reflects the person’s likes and dislikes. Include time for physical exercise and ample time for meals and bathing.

Use visual cues that remind them of the date, where they are on and time.

Spend time looking at old pictures and recounting old events.

Encourage them to play games that they are comfortable with.

Stage 2 – Moderate Dementia: The person has severe difficulty with remembering, orientation, handling problems, and social judgement. They find it increasingly difficult to express their thoughts and perform tasks. Complicated tasks are abandoned, only highly learned material is retained, and simple tasks are preserved.  They may often act in unexpected ways, refuse to bath and have trouble dressing. The person requires assistance in hygiene and grooming. You role as a caregiver is vital. At this stage, you will need to be flexible, and patient. Your routine, structure, and level of involvement are important to the person. You must take care of physical and emotional health! Ensure you regularly take time out for yourself and help from others. Do NOT isolate yourself.

Follow a routine.

Always use a calm voice when speaking.

Respond to the emotion and not the words/question. They often need emotional comfort, reassurance, and love.

Use written reminders or visual cues.

Inform the doctor if you notice any changes.

Stage 3 – Severe Dementia The person has severe memory loss, is unable to make judgments, communicate, or solve problems. They may have difficulty eating, swallowing, and walking. They often appear too ill to be taken to functions and is oriented to only a person. The person needs a full-time carer, much help with personal care, hygiene, and grooming. The person is entirely dependent on you. You are very important to them. If things become too much to handle you must seek help! Options like home or hospice must be looked into and used as an option. Play his or her favourite music, read portions of their favourite books or books that have significance to them.

Prepare their favourite food. Adapt foods if swallowing is a problem. If weight loss is noted, speak to your doctor they can add supplements.

Set a toileting schedule and maintain it. Limit fluids before bed time but ensure you provide adequate fluids during the day. Use incontinence products like adult briefs and pads.

Change their position every two hours, ensure you relieve body pressure and improve circulation. Motion exercises and a light body massage relieves freezing and are proven to be beneficial.

Keep their body, mouth and teeth clean. Treat cuts, scrapes, or any bruises immediately. Protect them against any infection.

On a pleasant sit outside together.

Remember everyone is unique, no two people with dementia will progress exactly the same way. Their progression and hence your role will vary, it is important that you are alert and aware of the changes.


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